Re: Re: sarcoid in the brain and around the hypothalmus

[Guest guest]

Mona,

I posted on the Stages of sarc a couple of days back, so you should have it in your emails from the group.

With the group, you are welcome to read ALL the posts-- as many times we address issues that everyone needs to know about, and we do a general post to cover those bases.

I"ll see if I can find it and repost again.

The depression and mood issues are so much the prednisone-- and you really need to tell your doc that this is happening. He can switch you over to one of the alternatives-- Methotrexate, Plaquenil, Imuran, Arava. and wean you off the pred as you go onto one of the 'steroid sparing" choices.

It might be wise to get a referral to an immunologist or rheumatologist-- as they have more experience with autoimmune diseases and inflammatory diseases and aren't as conservative with the meds they use.

So many of the docs think pred is all there is-- so we have to be our own best advocate and educator.

To be in "stage 2" is no big deal. What it will mean is that the first time around when they gave you the prednisone-- it just put the sarc into a "remission." Sarcoidosis does not "go away" it is a life long condition. The amount of influence it has differs for each of us. It's not a death sentence-- and with it reoccurring, then you can pretty much count on it being a "chronic" issue. Again-- that doesn't mean a death sentence.

The more recent research shows that when someone is put on prednisone, weaned off, that the chances are higher for a reoccurance. So all the pred does is mask the issue. With all the nasty side effects- so making the transition to a steroid sparing choice is good for you.

Many, many people lead fairly normal lives even with chronic sarcoidosis. You learn to listen to your body, rest when you need to-- and pace yourself.

Getting the vitamins and minerals your body needs is so important-- MSM powder is excellant for the joint muscle ligament pain-- www.puremsm.com and I know for me, it has enabled me to live without pain meds for the most part.

Vit C is a great natural anti-inflammatory and detoxifier. Increase your dose to the point of ending up with diarrhea-- then back off until that little issue stops, and that is the dose you need.

Milk thistle works wonders to detox the liver-- and when on ANY of these meds-- is an absolute must. You need to be on Folic Acid (B12) when on any of the immunosuppresants, so you don't end up with pernicious anemia. Get a script, so insurance covers it-- 1mg tablets.

Get rid of the fast foods and sweats, and you'll find your brain fog is so much better. It also helps get the neuropathy under control. If you can go "organic" and "pesticide free" it will help also-- otherwise make sure you wash your fruits and veges to get them as healthy as possible.

I've personally found that I needed to add calcium/magnesium, especially when I was on prednsione-- as the pred leaches all the calcium from your bones-- and you end up hurting more-- especially as you try to wean off it. Have the doc check your calcium levels and if they aren't high (hypercaluria -urine and hypercalcemia-blood) can tell alot.

I'll go into more detail on this issue later.

Most important-- relax- do some deep breathing exercises, and trust that you will get this under control. To keep yourself in fear is not healthy-- it sends all the wrong messages to your immune system, so you just end up in "high alert" fight or flight state-- and that has your body sending out the immune cells to fight something. Even if a problem doesn't exist.

Hpe this helps,

Tracie

NS Co-owner/moderator

Subject: Re: sarcoid in the brain and around the hypothalmusTo: Neurosarcoidosis Date: Monday, April 6, 2009, 2:14 PM

> > > From: mary bauer <marybauerb@ yahoo. com>> Subject:

Questions ???> To: Neurosarcoidosis@ yahoogroups. com> Date: Saturday, March 21, 2009, 9:00 PM> > > > > > > Does an Ant inflammatory Diet make a difference in battling N.S.??> > I have been taking Prednisone 60mg dly since Oct, 2008. Sleeping through the night continues to be an issue. Am now trying Lunesta 4 mg. with some but not complete relief-What has helped other people with this issue?> > The sarcoid is located in my brain next to the hypothalamus- Original size was 2 1/2" X 1/2", has shrunk to almost nonexistent, between Oct and Nov,2008. Between Nov.,2008 and Jan. 2009, no change. The other area affected is in my spine from C6 thru T2. Again 1st follow-up M.R.I. showed signed shrinkage, 2nd follow-up showed no change. I am returning April 13th for M..R.I and Lumbar Puncture. Should I be concerned

due no change between the 1st and 2nd M.R.I.?? I don't feel any better.> > I feel so lousy and fussy headed, is this due to the Prednisone, higher dose of Lunesta, N.S. or a combination of all three. I go to he Mayo Clinic in Rochester, Mn.. I am so tired of hearing "We aren't sure, we deal with so few of you with this diagnoses" I kinda feel like I am their guinea pig. Where is the best medical facility in the country to offer me the best chance in beating this disease?> > What are my chances in beating this deisease??? There must be stats somewhere.> > Help..I need answers to save my sanity...Thank you, Thank You> > Desparate > I to went mayo in rochester and saw Dr.Todd Nippholt and he was wonderful. I have developed adrenal

insufficiency from the sarcoid attacking the endocrine system. Which includes the hypothalmus you might ask about this because it has caused many problems and a lot of hospitalizations if you read about ai you will read about adrenal crisis which is the reason for the hospitalizations. Has this even come up? too many steroids but like I asked Dr. Nippolt if the steroids were keeping me alive and the answer was yes. To all I just returned from a two week vacation in Florida visiting my daughter and family the Grandchildren are great and the 5year old Raina did not want me to leave. Tearful departure we also took our other and 4 yr old granddaughter Arinna who live in maryland and we sure had a great time. I did overdue it so I came back last monday and right into the hospital for iv fluids and steroids iv and yesterday the vertigo returned I can't win. I read the posts of others with vertigo and so I am so afraid of falling down. I understand your

desperation and sometimes we have to feel that as awful as it is I wish I could take it away from you? If I ever figure out how to do that oh boy miracles and healing maybe someday! When I start to ramble it is time to say goodbye for today! Have to mention 8 month old Grandson Braeden is so beautiful I could cuddle him all day but of course he would rather scoot around. prayers to all your sarc friend Anne

[Guest guest]

It helps me. *wink*

Jackie

Questions ???> To: Neurosarcoidosis@ yahoogroups. com> Date: Saturday, March 21, 2009, 9:00 PM> > > > > > > Does an Ant inflammatory Diet make a difference in battling N.S.??> > I have been taking Prednisone 60mg dly since Oct, 2008. Sleeping through the night continues to be an issue. Am now trying Lunesta 4 mg. with some but not complete relief-What has helped other people with this issue?> > The sarcoid is located in my brain next to the hypothalamus- Original size was 2 1/2" X 1/2", has shrunk to almost nonexistent, between Oct and Nov,2008. Between Nov.,2008 and Jan. 2009, no change. The other area affected is in my spine from C6 thru T2. Again 1st follow-up M.R.I. showed signed shrinkage, 2nd follow-up showed no change. I am returning April 13th for M..R.I and Lumbar Puncture. Should I be concerned due no change between the 1st and 2nd M.R.I.?? I don't feel any better.> > I feel so lousy and fussy headed, is this due to the Prednisone, higher dose of Lunesta, N.S. or a combination of all three. I go to he Mayo Clinic in Rochester, Mn.. I am so tired of hearing "We aren't sure, we deal with so few of you with this diagnoses" I kinda feel like I am their guinea pig. Where is the best medical facility in the country to offer me the best chance in beating this disease?> > What are my chances in beating this deisease??? There must be stats somewhere.> > Help..I need answers to save my sanity...Thank you, Thank You> > Desparate > I to went mayo in rochester and saw Dr.Todd Nippholt and he was wonderful. I have developed adrenal insufficiency from the sarcoid attacking the endocrine system. Which includes the hypothalmus you might ask about this because it has caused many problems and a lot of hospitalizations if you read about ai you will read about adrenal crisis which is the reason for the hospitalizations. Has this even come up? too many steroids but like I asked Dr. Nippolt if the steroids were keeping me alive and the answer was yes. To all I just returned from a two week vacation in Florida visiting my daughter and family the Grandchildren are great and the 5year old Raina did not want me to leave. Tearful departure we also took our other and 4 yr old granddaughter Arinna who live in maryland and we sure had a great time. I did overdue it so I came back last monday and right into the hospital for iv fluids and steroids iv and yesterday the vertigo returned I can't win. I read the posts of others with vertigo and so I am so afraid of falling down. I understand your desperation and sometimes we have to feel that as awful as it is I wish I could take it away from you? If I ever figure out how to do that oh boy miracles and healing maybe someday! When I start to ramble it is time to say goodbye for today! Have to mention 8 month old Grandson Braeden is so beautiful I could cuddle him all day but of course he would rather scoot around. prayers to all your sarc friend Anne